Two years ago this fall my husband and I watched in horror as our non-verbal sixteen-year-old son with severe autism and OCD fell prey to a mysterious malady that would eventually take eight doctors, as many diagnoses, and almost a year to figure out. To say Justin suffered would be an understatement; frankly the rest of his family suffered too just by witnessing his discomfort.
After a number of false diagnoses he was eventually diagnosed with tic disorder, and would have had a full Tourette’s diagnosis if he could speak. For treatment, we simply tripled a medication he was already taking. Although within a few weeks his symptoms, freezing up and being rendered immobile for up to an hour at a time, were dissipated, they’ve never fully receded, and never will. Finally last fall we saw some relief for him. No longer was it a struggle to get him out of bed, get him on the toilet, dress him, get him to eat, get him into the car, etc.
No longer was every single second with him excruciatingly difficult.
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My husband and I were immensely relieved to see his improvement, and I’m grateful every day he’s doing better, that we have been able to resume most of his activities with him, and that he’s once again compliant in school.
But the truth is, things weren’t really over in September. Justin’s limited speech declined drastically. His self-help skills, so hard-won, deteriorated.
And worst of all to me, his joy seemed to have disappeared.
Over time, the light has begun to come back to my boy. He is once more affectionate, cracking up more and more over the sounds emanating from a treasured toy or a favorite DVD. He still needs a firm hand to get him to move around sometimes, but he generally is compliant, and the aggression that had resurfaced has mostly retreated. Given that he’s also a teenager and just might not show as much joy as he previously had (my tween is a perfect example) I think we’re on the right track with him, and this is his new normal.
I don’t like it. But I have to accept it.
One thing I will not let go of however is his self-help skills. For Justin’s entire life myself, his father, his therapists and his teachers have worked tirelessly to give him the tools of semi-independence, tools he will need to be successful in an after-21 program one day, and ultimately in a residential program. Over the course of many months we mastered potty training, eating more than one thing, sleeping (that one took years), and going out into the community. We are thankfully back on track with all of those skills, but Justin’s self-help activities have fallen by the wayside, and it’s time for me to man up, and get him back on track.
Fortunately I have help, as his school sends out their BCBAs (Board Certified Behavior Analysts) to do house calls (!). I am hopeful he will once again be dressing himself, brushing his teeth, showering somewhat independently, and my favorite, using a fork.
That last one has remained elusive; I’m hopeful the third time’s the charm.
The BCBA will be coming out to us in the fall, and I think I finally have the mental and physical energy to address these issues. To be perfectly honest with all of you, the tic disorder, and the havoc it wreaked on all of us for the better part of a year, sucked the life out of me. I had anticipated something might strike as he entered his teenage years, but I had no idea how difficult things would be, that this latest disorder would derail our family for a time.
The truth is, I needed time to recharge before I geared up for the self-help fight, and I’m glad for once I didn’t barrel through and take this on immediately. I’ve had to remind myself that he is years away from graduating from his school, years away from when his independence, or what he can acquire of independence, is of paramount importance. We have time.
This will take time.
And it’s so important as we address these hurdles that I have patience, that I refuse to mourn what we have lost and instead focus on what we will gain.
Wish us luck.
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